Author: Julia Dain

May, ME Awareness month, has come round and so it is time for me to write about ME again.

My daughter Rosie, for those who do not know her, was an active person with a full social and working life until she got flu three winters ago. Six months later she was diagnosed as having CFS/ME. She has been living with me for eighteen months, in official terms I am her carer.

Rosie has had a further decline in health since my post last May. She can no longer manage the stairs and so she lives in two upstairs rooms, her bedroom and a small room with a sofa, across the landing from the bathroom. She does not go outside, she does not have any visitors, she does not take phone calls, she communicates with me mainly by text or email. Family and friends have between us packed up the contents of her London flat, let it out, and disposed of her car.

Away from the personal: the past year has seen new developments in research into ME. The NIH has started an intramural study on the clinical and biological characteristics of the disease. The Open Medicine Foundation’s Severely Ill Big Data Study aims to find diagnostic biomarkers and treatments.

I have made a deliberate attempt to make this post factual and to keep emotion out. Here are some of the words that have not been allowed in:

The train out of Leicester was stuck behind a faulty goods train so David arrived at Oxford an hour later than he’d intended. He’d spent an anxious time at Birmingham New Street station wondering whether he would have to buy another ticket, and how he would get to the college if he missed the bus laid on for interviewees. His father had given him five pounds “in case of emergency” but he was saving that towards a copy of the new physics sensation, A Brief History of Time.

His original ticket wasn’t checked on the train, so he still had his fiver, but he was too late for the bus. David decided to save on a taxi fare and he set off on foot, following signs to the city centre. In a crowd of tourists milling around a crossroads, he pulled out the map the college had sent and saw he was probably only a few minutes walk away. Just as well, he thought, he’d lost most of his contingency time already and was in danger of being late.

He walked fast down the high street past several huge stone buildings until he came to a bridge over the river. He checked the map and saw he’d come too far. He wondered which of the anonymous buildings was the college which had, amazingly, called him for an interview. Each building had one small ancient door either firmly shut or barred by a notice stating “No Visitors”.

At the first open door, David plucked up courage, climbed the stone steps and skirted the forbidding notice. He was addressed by an elderly man sitting in a cubicle behind a dirty window: “Are you for Professor Parker today?” David checked his interview letter again. “Er – is this University College? I’ve got maths interviews, starting at two o’clock. I’m just a few minutes late I think”. He was let through and directed to an opening on the far side of a large courtyard.

David had thought Oxford would be different but this was beyond what he had imagined. This was daunting. The stone buildings, the mullioned windows, the manicured turf were nothing like school, nothing like the other university he had visited. The place reminded him only of Leicester cathedral and the nervous business of confirmation there. David could feel his asthma, already set off by his rapid walk, taking hold. He took a quick breath from his inhaler, checked the list on the door in front of him for his name, and knocked.

The room was huge. David took twenty steps towards a large table, behind which sat five men studying papers. The man in the centre looked up and spoke. “Good afternoon, Mr Rees. It is Mr David Rees isn’t it? I’m Professor Parker, and these are my colleagues Professor Busbridge, Dr Briggs, Dr O’Brien and Dr Patterson. Do sit down.”

“Er, afternoon.” David sat facing the men, trying to see if the papers were his entrance exam.

“Tell us, Mr Rees, why you applied for a place to read mathematics at this university.”

“Um, well, I like maths, I did alright at exams, um, my teachers said I should try to get in here…”

“I see. Do you think you did alright in our entrance exam?”

“Well er I think the first question was, I didn’t really know what it was about, I didn’t know what a mapping was, I haven’t heard about that before.” David felt sick; he couldn’t recall much about any of the other questions. There was a pause.

“Alright. What particular topics have you been studying in your pure mathematics A-level course this term?”

David’s mind went blank. What on earth had he been doing at school this term? And what on earth was he doing here? He fought the desire to get his inhaler out and tried to imagine himself back at school.

“Well algebra I think, some geometry, we did a bit more calculus a few weeks ago.”

Professor Parker drew on one of his stock interview questions. “Calculus, yes, maybe you could tell us what integration by parts is?”

David’s mind blanked again. He shifted in his seat. “Um. I’m sorry. I don’t, I can’t, I don’t remember”. Another pause. “I like numbers.” That was pathetic. It was true, but no sort of answer to the question. He was throwing his chance of a precious place away.

“Alright. Mr Rees. You say you like numbers. What is twenty five minus seven?”

David paused for some seconds. Then he thought, I can’t answer that question, I don’t know what twenty five minus seven is. He got up, turned round and walked twenty paces back towards the door. Nobody said a word. He opened the door, walked down the stairs, round the courtyard and out of the college, up the high street and back to the railway station.

In August David received top grades in each of his A-level exams, and distinction in the special papers.

Three years later David obtained a first class honours degree in pure mathematics from Manchester University.

He is now the author of several best-selling computing books and training videos, and one of the best software developers I know

But I can’t. I can’t imagine what it’s like to be ill for six months; a year; ten years. To be lying on the sofa, day in, day out; to ask someone else for everything I need. I can’t imagine what it’s like to have to think about every movement I make, to plan each action, so that next time I need to go the toilet I have just enough energy to be able to get off the sofa and get to the bathroom. I can’t imagine what it’s like not to be comfortable sitting up in my armchair reading a book. I can’t imagine what it’s like to be so sensitive to noise that I can’t listen to music. I can’t imagine what it’s like.

I can imagine I’m skiing in the sunshine in Italy. I can imagine I’m running through the park. I can imagine I’m going to work, to the job I love. I’m meeting friends in a bar. I’m going to the cinema. I can imagine all that. To lose all that – I can’t imagine what it’s like.

But that is what it’s like for someone with M.E.

I’m caring for someone with M.E. My daughter. She had that life, the job, the friends, the home, the independence she worked so hard for; now she spends every day on the sofa in my home. She’s cheerful, she’s brave, she’s working hard to regain some of that life she had before. She’s a hero.

The disease is not properly understood, neither scientifically nor socially. The name M.E. (myalgic encephalomyelitis) itself is contested; the NHS use the term CFS (chronic fatigue syndrome) instead. Scientists and doctors don’t understand it; some current thinking models M.E. as an immunological/neurological disease – a failure of the immune system. Socially, it’s a disease that friends and family struggle to come to terms with. Until I lived with a person suffering from it, I didn’t realize how much effort it took out of them just to have the briefest of conversations with me. Some people don’t believe that M.E. exists at all. Some people believe “it’s all in your head” (maybe they haven’t seen some of the physical effects of the disease – the pale complexion, the dark circles under the eyes, the skin problems). I still struggle to talk to people about the illness. I can’t explain how disabling it is, and I find it embarrassing and painful to talk about.

I’m trying to make some sense of the disease in this way: failure of the body’s immune system in an ill person means that their energy system isn’t working properly. That puts huge pressure on them physically and mentally. Their body hasn’t got the power that well people take for granted, so for them, doing the most ordinary things like sitting up is hard, and overdoing things has awful consequences. Coping with that huge loss of energy puts huge pressure on mentally.

Imagine what it would be like, to know that presently there is no known cure for the disease you’re suffering from, no remedy for your symptoms, no idea when you might be able to get up off that sofa. Imagine.

The gnarly doughy loaves coming out of the (third) new oven got me down (you’ve got to have nice bread to eat, and it’s my “signature dish” for goodness sake). I consulted my bread books and the internet. The advice was confusing. The dough is too wet or too dry. It’s over-proved or under-proved. The oven is too hot or not hot enough.

Time for some analysis. I’d been using the same recipe and the same method, more or less, for donkeys years, but the oven was not the same. Was that the only variable?

Strictly speaking, no. There are many variables when baking. Flour – even the same brand; it’s a natural product, and the flour millers are allowed some variation of moisture and protein content. Yeast – dried, fresh, fast action. Kneading time and pressure. Rising time and room temperature. Size and shape of loaf. Proving time. Baking tin, tray, tile or stone. Slashing (loaf not wrists), knife or razor, depth of cut, etc, etc.

I used different flour, different yeast, all my different tins, trays and tiles. There wasn’t enough time left in my life to vary each parameter independently so I didn’t do that, and I didn’t keep records either. So much for the scientific method. Anyway the loaves were still coming out gnarly and doughy, whatever I tried.

My husband was taking an interest too. He suggested all the above and I just got more and more cross with the oven. I said, I’ve always baked bread like this, I’ve used lots of other ovens, I don’t understand it. He suggested the bread wasn’t rising evenly, but why, and what to do about it?

Last week, he took a really close look inside a loaf. We both could see doughy bits next to stupidly large holes. He said, the top crust is very thick and I think it’s trapping air (carbon dioxide actually) inside the loaf and stopping it from rising. And light began to dawn. I remembered that when I baked in my daughter’s fan oven, the best results came when baking in a cast iron pan with a lid, to stop the fan from drying the top crust out too much. Maybe my new, FAN, oven was doing the same.

The next batch of bread I put in to the oven with the fan off, using what the oven guide calls its “conventional grill” setting (grill? I think not), “top and bottom heat. ideal for traditional roasting. The meat is placed in the middle of the oven, roast potatoes towards the top”.

After half an hour fiddling with the temperature control and kneeling by the oven peering anxiously in, Great British Bake Off style, I took the loaves out. YES! Decent loaves. No doughy bits. Biggish holes but not too big. I kissed my husband.

With hindsight, I can’t understand why I followed the oven’s user guide. Specifically, the bit which reads “Intensive bake – fan, top and bottom heat – suitable for food with a high moisture content, such as quiche, bread and cheese cake.” Or perhaps I can understand why. As a software developer, I’ve learnt to stick to the rules.

Clearly this particular user guide is not completely trustworthy. But the bit which reads “WARNING! – the appliance and its accessible parts become hot during use” seems to be accurate.

Loaves are baking as I write. I hope to goodness they’ll be nice as we’re very hungry.

My new kitchen was lovely. The new gas hob was lovely. The new cupboards were lovely. The new gas oven was … burning things. (And the fan was horribly noisy.) Roast potatoes were black on the underside. Meat was sizzled. My loaves had black bottoms.

The problem seemed to be that the burners in the oven were on the bottom and were firing directly up into the baking tins. My old gas oven had burners tucked safely away at the back, so the flames hadn’t been burning stuff.

I pressed on with the new gas oven but after many months I still couldn’t solve the burning problem. Neither could the internet – I wasn’t alone in finding bottom burners difficult. (And the noisy fan was driving me nuts.)

In December I went to the Good Food show to sell my company’s smart app to retailers. Instead a talented salesman sold me a British made electric oven with a whizzy new feature, an induction plate in the bottom of the oven! I sold the gas oven on eBay and my super new oven was installed three days before Christmas Day.

The turkey for family Christmas dinner roasted OK (phew). I made a casserole and cooked it on the induction plate. It was horrible – the meat was really tough. I tested the induction plate. It never got warm. An engineer visited and mended it. It still didn’t get warm. A second engineer came and mended it; it still didn’t get warm. A third engineer came and put a new induction unit in. That didn’t get warm either. I got stroppy and a fourth engineer replaced the oven with a similar model without an induction plate.

At last I had an oven which didn’t burn everything and didn’t have a super new feature that didn’t work and I could start worrying about bread instead. My loaves weren’t perfect, but I recognize that it takes time to get used to a new oven. I felt that I had experience with a large number of different ovens, I had always managed to produce a decent loaf of bread after a while, and so it would be with this oven.

Two years on and I am still struggling to bake a decent loaf of bread.

My oven was giving me a headache. It was getting to the point where I was resisting turning it on, even though I had stuff to bake. The loaves were coming out gnarly like gargoyles on the outside, and with nasty doughy streaks inside. Sometimes the doughy parts ran along the bottom of the loaf. Sometimes they were scattered in the middle, surrounded by large holes.

I’ve been baking bread for over fifty years. It all started with a family holiday in Italy. I was fifteen years old and, aside from getting sunburn and having a horrible hotel bedroom with a hot chimney from the kitchen running through it and all the teenage angst of feeling ugly and alienated from everyone, I guess I had a good time. The highlight was going out one evening with our waiter and being taken to a streetside pizza place. I’d never heard of pizza, never mind eaten one or seen a pizza oven in action (this was the early nineteen sixties). It was amazing! I can still see the oven glowing in the dark evening. I didn’t get a second date with the waiter and we returned to England without further pizza experience.

There was a rather upmarket grocer in the Essex village where we lived, and I was excited to find on his shelves a box containing a “Pizza Kit”. The box contained a plastic bag of flour, a sachet of yeast, a tin of tomato puree, and a plastic bag of grated cheese of a Parmesan type. And some instructions. My first venture into baking with yeast – I can’t remember how the “pizza” tasted, but I bought more than one more box of Pizza Kit from that grocer.

Some years on, stuffed onions well behind me, making bread had become my thing. You can’t really call a loaf of bread a signature dish, but to me it was mine. And still is. My bread bible has been Elizabeth David’s classic English Bread and Yeast Cookery. From that book I learnt to use not much yeast, plenty of salt, and to rise the dough very slowly, a technique well suited to a person out at work all day. Mix up the dough and knead it one evening, bake it the next evening. My signature loaves were made from a whole bag of Jordan’s flour and less than a teaspoon of dried yeast, mixed in a plastic washing up bowl.

I moved house four times in two years and learnt the ways of the four different ovens. Edible loaves were produced.

Many years on, children grown up and left home long since, I moved again and took my gas cooker with me. The signature loaf was now a white loaf made with supermarket flour but still slow risen, same quantities.

But the kitchen was tiny and falling apart. It was my chance for a brand new kitchen, one i could design myself. And the gas cooker was old so it had to be replaced too. I spent ages on the internet and in shops researching cookers. I chose a gas hob from IKEA and a gas oven from an internet appliance store.

“I’m fine thank you. I’ve got Milly here now, can I call you back in a bit?”

“Yes, sorry, of course, I should have remembered it was your day with the grandchildren.”

Milly speaks. “Is that auntie Sophie? Can I talk to auntie Sophie?”

“Yes, yes you can. Sophie, I’m going to give the phone to Milly. I’ll call you later. Bye for now.”

Milly takes the phone from Susan. “Hello auntie Sophie.”

“Hello Milly. How are you? Have you been at school today?”

“Yes I have.”

“Um. Are you looking forward to Christmas? What do you want for Christmas?”

(quietly) “A toy robin.”

“A toy – what?”

(even more quietly) “A toy robin.”

“Oh! a toy robin. Does it do anything?”

“No, it’s just a robin.”

“Oh. Well …”

Susan takes the phone back. “I’ll call you later, bye sweetheart.”

Susan is impressed with the idea of a toy robin. And the question – she hadn’t thought to ask Milly what she’d like for Christmas.

A couple of days later she is still thinking about the toy robin, the modesty of the wish, the innocence of it. It brings her to tears in a way she can’t fully understand. Her husband David talks to her about her tears and she realizes she has to act. She will go on a quest for a toy robin.

Susan is not a shopper. Shopping for food is fine, nothing else, she loses heart and concentration after half an hour, and Christmas shopping in actual shops is especially bad. In Susan’s book, that’s what the internet is for. David knows this and will come to town with her to look for the robin. It’s too late to go online.

They set off at two o’clock. It’s cold and dusky already but the streets are crowded. They plan to walk down one side of the high street, visiting all the possible shops, then take a break in the library at the bottom of the street, and return up the other side.

First stop is Poundland. There’s lots of Christmas stuff, Santa hats, reindeer hats, owls, penguins, but no robins. The queue to pay stretches past long shelves of chocolate.

Next, Card Factory. There’s a queue to get in, and inside it’s like shuffling round the Sistine chapel. Susan looks at more Santa hats, candles, cuddly toy lions, tigers, aliens, penguins again, reindeers. A flashing snowman catches her eye. It’s jumbled up in a box with some owls and – hurrah! – one robin. She picks the robin up (it’s plastic) and it emits a purple light. She squeezes its tummy and the light comes on again. She squeezes again. It’s fun! (but not cuddly). She clutches on to it. David has found a snowman glove puppet. They wait in line to pay.

The robin doesn’t quite fit Susan’s idea of a toy robin (what, really, did Milly have in mind – a soft toy, she guesses) so they press on. Robert Dyas, Marks and Spencer, the Entertainer, Hawkins Bazaar; the parade of shops goes on and on. Susan is intrigued by the large number and variety of owls on sale. Are they this year’s Christmas theme? and why? In Clinton’s Cards she buys a soft cuddly reindeer.

At last they arrive at the library. Susan spends some blissful minutes choosing books. Lindsey Davis, Margaret Drabble, Sara Paretsky, and (daringly) Karl Ove Knausgaard. How she loves the library.

But the quest must go on. Susan and David set off back up the high street. There are many shops yet to visit, including the dingy W H Smiths (usually boycotted for a reason Susan cannot entirely recall; something to do with South Africa? or Private Eye?), and the not at all dingy Paperchase.

Finally Susan admits that she hasn’t focused on anything on the shelves for at least the last couple of shops, and the quest must end. She asks David the time. It’s only half past three – they’ve only been shopping for an hour, not counting the time in the library haven. It feels like the whole afternoon to Susan.

The sky is dark and the Christmas lights are on. They walk slowly home. Susan unpacks her purchases: a reindeer, a snowman, and a robin, which has turned itself on in the bag and is now flashing wildly, red, purple, blue, green – hang on. Susan looks more closely. The bird is slender and tallish. It’s black with a white tummy. It has black flippers, a Santa hat and a blue scarf. It’s a penguin.